A brief update on Sammy

Today is Friday, and I thought I’d throw together a brief update for everyone on how Samuel is doing. I’ve added in some pictures below.

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He looks all puffed up from the IV. He has the ventilator down his throat, and many of the other tubes and wires are into his PICC line, or a central line used for drawing blood, giving medicine and feeding him.

Samuel’s been at Stanford since Tuesday and it turns out he tested positive for Rhinovirus – better known to me and you as a common cold.  So this may be one of the things that’s been causing his problem, or could be the sole reason he’s had such a difficult time.  I’m not entirely clear when he got it, or why it wasn’t detected at John Muir.  It is a good thing that we had some new eyes on him though.

He’s been doing OK overall.  He still produces a tremendous amount of secretions – saliva, mucous and other fluids – that continues to make him cough.  It’s really hard to cough and get that out when you have a breathing tube down your throat.  So the nurses are having to help him periodically with lots of suction.  He does still desaturate his oxygen levels during coughing to the point where in recent days they needed to “bag him” to get more oxygen into him.  I’m told on late Tuesday and early Wednesday his desaturation levels went down as low as into the 30’s.  We’ve never seen it that low and it’s a serious situation.

They were doing a battery of tests on him the past couple days.  They identified the Rhinovirus on Wednesday and stopped the antibiotics they started giving him.  They weren’t sure what they were dealing with so they started him on antibiotics as a safety measure in case he had something bacterial, but since it’s viral the antibiotics will not do anything to help.  All he needs is patience and time to recover from that virus.

They also did some monitoring of his brain activity just to see what was going on and if everything was normal.  When he was coughing his body would tense up, and they wanted to rule out a seizure, so they connected his scalp to an AEEG machine.  They noticed some abnormal brain activity, but they believe it correlates to when he’s having his coughing fits, so they hooked up a VEEG machine, with a camera to record his facial expressions and what he was doing over a 24-hour period so they can correlate what’s going on.  We don’t have feedback from that yet, but reasonably assume these are just coughing fits.  They were more concerned that he may be having seizures.  It will be nice to rule that out.

The brain monitoring does appear to have left some marks on his head.  Photos of them are shown below.  I spoke to a nurse this morning who explained that the AEEG leeds are connected by preparing the scalp first before connection.  However the VEEG needs different leeds, and it doesn’t appear as though Sammy’s scalp was prepared correctly.  She also said there’s some sort of “glue-like” substance used to connect them to the head.  She’s not sure if the problem was caused while they were connected or during their removal, but they were open sores that are now scabbing over.  She has filed incident reports with her management and have spoken with the doctor and charge nurse.  She believes the people doing the VEEG just weren’t careful.

I explained to her that I’m quite upset about this and would like to talk with the people responsible.  It doesn’t seem like they followed procedures and I can’t tell what kind of pain Sammy may have gone through.  He’s a defenseless baby and it doesn’t look like care was taken during his testing.  If nothing else, I’d like for somebody – other than the nurse helping him today – to take ownership of it and apologize to me.  It’s very troubling.

Today, Friday, I’m told he’s doing better.  He’ll be getting feeds again with formula instead of continuing with the IV.  They’ll start him very slow and ramp him up.  He will remain on his ventilator until Tuesday, when he undergoes a Bronchoscopy.  The nurse today tells me it’s typically done bedside, but because of Samuels’ condition and significant secretions, they’ll take him into a room similar to an operating room so they can be more thorough.  For now, the nurses are suctioning every 30-45 minutes to help try and prevent the coughing fits and desaturations.

Kristen has been visiting him each day, and already she’s sick of the 100-mile roundtrip drive, but she has to see her boy and spend time with him.  I’m finally well enough that I’m likely to be able to see Samuel this weekend, so I’m excited to spend time with him again.  He’s still expected to be sedated, but seeing him will be good medicine for me to feel better about things.

Finally, I can’t do an update and not include a couple pictures of Jacob from early Friday morning.

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2 thoughts on “A brief update on Sammy

  1. Thinking/praying about you guys all the time.. I’ve said before that Sammy is such a trooper.. But was thinking about him during the basketball game last night & realized he is really a Warrior! Such a strong little one. Vulnerable & tough/resilient all at once. With loving parents who are strong with him & for him. You are all so fortunate to have each other! Xoxoxo!
    Sending get-well kisses for his little scalp. Disappointing for sure 😦
    And then there’s Mr. Jacob, holding down the fort at home 😀
    I love the pictures of him in the Big Chair.
    Enjoy your time with your boys this weekend. Thinking of you all (& always Charlie, too 💙

    Liked by 1 person

  2. Thank u so much for the Sammy (and, of course Jake) updates. I miss my little buddy – let’s hope they can figure out the issue with the eeg residual on his precious little head. Thoughts are with u ! Colleen (give Sammy a hug for me)

    Liked by 1 person

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